In this episode, Physical Therapist at Pro-Activity, Dr. Daria Oller, talks about living with Long Covid.

Today, Daria talks about the signs, symptoms, and causes of Long Covid, how to implement #StopRestPace, and how wearables can help guide your decisions. What are the considerations for athletes wanting to return to sport post-Covid-19 infection?

Hear about the role of social media when it comes to Covid, the many mental health aspects of Covid, and get Daria’s advice, all on today’s episode of The Healthy, Wealthy & Smart Podcast.

Key Takeaways

“Long Covid comes after an acute Covid-19 infection. The current definition is ‘prolonged symptoms after 4 weeks.’”
“It’s multisystemic… Two people don’t present the same.”
“We’re not in a lab. We can’t control for every possible thing. Just tweak one little thing and see what happens.”
“Our energy is very finite.”
“Learn how to pull back, do what’s really essential first, and find opportunities to rest when you can.”
“Work with where you are that day.”
“With any athlete who has had a Covid infection, you just need to be aware and monitoring for possible red flags… The fact that they’re able to keep going doesn’t necessarily mean that it’s safe.”
“There are people who are committing suicide from Long Covid.”
“There are lots of great peer support groups. Even if you’re not getting professional help, you at least have other people you can relate to.”
“Looking for those little wins and victories, even if they’re small, even if they don’t seem like much, it helps.”
“Do not try to push through symptoms… Stopping, resting, and pacing makes a really big difference.”
“You don’t have to push so hard all the time. Things will be there. You know yourself, you know what you’re capable of doing, but resting is as important as pushing hard.”

More about Daria Oller

Daria Oller is a physical therapist at Pro-Activity in Lebanon, New Jersey in both an outpatient clinic and on-site with employer clients. She specializes in working with dancers and athletes and in prevention and health promotion. She is also an athletic trainer, having worked in clinical, research, and education settings.

She served as the PI for a study describing the injury and illness experience of youth campers at university-sponsored summer sport camp program.

Daria contracted COVID-19 in March 2020. It continues to affect her daily life, including her ability to participate in and pursue her passions for dance and running. She is one of the founding members of Long COVID Physio, and has been sharing her lived experience on social media.

Suggested Keywords

Covid, Physiotherapy, Recovery, Long Covid, Healthy, Wealthy, Smart, Symptoms, Relief, Pacing, Resting, Support, Energy, Mental Health, Sport,

To learn more, follow Daria at:

Website: https://www.pro-activity.com

https://longcovid.physio

Facebook: @LongCOVIDPhysio

Daria Oller

Instagram: @ontapphysio

@proactivityus

@longcovid.physio

Twitter: @ontapphysio2

@LongCovidPhysio

LinkedIn: Daria Oller

YouTube: Long Covid Physio

Twitter Accounts to Follow for more info on Long Covid:

@OT_Skiff @ahandvanish @PTOT4MECFS @PhysiosForME @ManeeshJuneja @itsbodypolitic @patientled @LongCovidPapers @AlyssaaErinn @ItsAngInLA @BreathewellPT @sunsopeningband @PutrinoLab @4Workwell @AHPLeader @SimonDecary @fi_lowenstein @MichelleBull4 @elisaperego78 @respphysio @Dr2NisreenAlwan @Dysautonomia @LongCovidKids

Subscribe to Healthy, Wealthy & Smart:

Website: https://podcast.healthywealthysmart.com

Apple Podcasts: https://podcasts.apple.com/us/podcast/healthy-wealthy-smart/id532717264

Spotify: https://open.spotify.com/show/6ELmKwE4mSZXBB8TiQvp73

SoundCloud: https://soundcloud.com/healthywealthysmart

Stitcher: https://www.stitcher.com/show/healthy-wealthy-smart

iHeart Radio: https://www.iheart.com/podcast/263-healthy-wealthy-smart-27628927

Read the full transcript here:

Speaker 1 (00:03):

Hey Daria. Welcome to the podcast. Happy to have you on this month, where we are talking all about long COVID symptoms and rehabilitation. So welcome.

Speaker 2 (00:13):

Thank you for having me.

Speaker 1 (00:15):

And now what's your interest in long. COVID let the, let the listeners know if they don't follow you on

Speaker 2 (00:21):

Twitter. It's a very public about this. I got sick with COVID last year in middle of March, 2020, and the symptoms never went away. And early on, we were told people recover in two weeks and after two weeks, I said, I'm not better yet. And I was young and healthy. I'm a distance runner, I'm a dancer, pretty fit, and I just wasn't getting better. And I didn't know anything about post viral illnesses at all. So being the good PT that I am, I just pushed exercise and pushed and pushed because that's what we do. And it made everything a lot worse. And then through Twitter some of the PTs who specialize in myalgic encephalomyelitis and chronic fatigue syndrome reached out to me when they saw my tweets and said, this is bad. You need to stop. We're gonna help you. So then it just snowballed from there.

Speaker 2 (01:07):

I started learning about chronic fatigue and the similarities that were coming up with long COVID. And so besides that, like just personally affects me, cause it really drastically effected my life and thinking if I wasn't aware of this and I'd been a clinician for 15 years, like how many other people don't know about this? Because it seemed like just as all the PTs with long COVID started finding each other. So many of us had no idea, and this is across all different specialties and settings, different ages. And we just didn't know, unless you somehow happened to wind up in the chronic, the peak space already. We had no idea and it seems really easy not only to make mistakes with ourselves, which many of us who got sick in the first wave did, but to then make mistakes for patients because you're going to do great at exercise. That's what we do. You're going to encourage patients to push a little bit, to push through all the symptoms and it's really dangerous. So I want to make sure, you know, that people are learning, that we're educating our colleagues and even they're trying to reach out to patients to and teach them how to advocate for themselves, teach them some of the basic information that's out. So yeah. So in addition to just affecting me personally, I've seen professionally how important it is to help educate and advocate.

Speaker 1 (02:10):

And can you, Darren and I spoke about this last week, but I feel like we can never say it enough. Can you define what is long COVID and what are some common signs and symptoms?

Speaker 2 (02:26):

Yes. So long COVID comes after an acute COVID-19 infection. So it basically, you don't clear the symptoms. You continue to have symptoms and they can change what the acute symptoms are in those first couple of weeks can be drastically different. What happens weeks and even months later, people are reporting new symptoms. So right now the current definition definition is prolonged symptoms. After four weeks, there are people who have it just for a couple of months. Many of us are on month, 15 month, 16, and some of the common signs and symptoms. Some like for me, example, seem to have carried over from the acute having shortness of breath, chest tightness, chest pain, all different kinds of chest pain. Dysautonomia is really common now. So we're seeing people who have really funky things happening with their heart rate, with their blood pressure, heat and tolerance, just a really poor tolerance to exercise.

Speaker 2 (03:14):

And so taking a term from chronic fatigue syndrome, there's post exertion mollies, or we've been saying post exertional symptom exacerbation. So whenever you can do not only exertion like exercise, heavy exercise, but just general physical exertion, you know, walking to the corner could have cognitive exertion, like going to work or emotional exertion that can set off a whole cascade and worsened symptoms. And that can range from just get small exacerbation to people, get fevers for me personally, like I can't get up off the couch. I can't speak really well. And it's multi-systemic so it's really interesting because two people don't present the same. Some people can have more neurological, some could be more cardio, some could be more cognitive respiratory. There can be a whole mix. We're seeing people who have mass cell activation syndrome and you're seeing allergic type things and rashes and changes in food tolerance and GI disturbances. It is really, really across the board. So there's no one set. This is what long COVID looks like. But if there are symptoms that are just continuing for weeks to months after the acute infection, terrible, terrible.

Speaker 1 (04:18):

And let's talk about from, so your physical therapist, athletic trainer, let's talk about the, some of the treatment parameters around people living with long COVID. So you had said, when you talked about why you're interested in long COVID it's because you are someone living with that and you said, I'm just going to exercise. I'm going to go harder. I'm going to put in a graded exercise program and that's going to get me all better because that's what we do. So tell me now, what should therapists or trainers be trying to implement into your patients or, or even you, if you are

Speaker 2 (04:57):

Someone living with them? Yeah. So it's, it can be such a different approach. I'll start with, there are some people that starting with the light exercise program can be appropriate, but there are things that you really need to monitor for. And nobody's like red flags. So looking at somebody has its own an again, seeing their heart rate blood pressure changes, just poor tolerance to even just moving from supine, to sitting upright, to standing poor tolerance to the heat, that trying to get that under control first so that it could be just working on breathing in their sessions, working in diaphragmatic, breathing, trying to get out of that, like very accessory breathing pattern because many of us hyperventilate and just don't even realize that we had adapted that pattern. I look at this tooth, I have one patient right now with it. I'm teaching people how to manage their symptoms, that these things are going to happen.

Speaker 2 (05:45):

And it tends to be very unpredictable and episodic. And that's, what's really frustrating. It's not that, oh, I just let me not do this. And then I'll be okay if I avoid this. Cause you could do something one day and be fine. And the next day it sets off a horrible crash. So teaching patients how to start recognizing those signs and symptoms and sort of like you can sort of tell sometimes and things are starting to go in a bad direction and what do you need to do if you're home, teaching them how to lie down, go through the diaphragmatic breathing. I've been sitting with my patient going through her day and like, where are there opportunities to rest? So this is very different than here's your theoretics program. It's where can you rest in your day? Where are, what are the things you absolutely need to do?

Speaker 2 (06:21):

Like eat, prepare food, order food, something like that. What are the things that, you know, are good you'd like to do with maybe aren't, you know, priority. And one of the stuff that like just don't even, it's not worth exertion that can set stuff off. So that's a really big part for me with the sessions is teaching people sorta how to figure out how to live with it. It's not a set plan. Like this is what you do, but here. So here's your life. Like I explained to my patient today, like we're not in a lab, we can't control for every possible thing and just tweak one little thing and see what happens. So here's your life? What do you need to do? And then how can we best set up to get you like that you're able to function that you were able to within reason control the symptoms. Like as an example, you know, right now it is incredibly hot in New Jersey, New York city. So we know that that can trigger symptoms. All right. So maybe we figure out if you have to have food shopping going early in the day, not going at noon when it's going to be really hot out. So there's not necessarily something set, but I look at it as helping people figure out how to live their lives right now while managing the symptoms.

Speaker 1 (07:19):

And that kind of takes me to the concept of pacing, which I think maybe a lot of people don't quite understand. So can you talk about what pacing is and how that differs from a graded exercise program?

Speaker 2 (07:31):

Yes. Hazing is so difficult. It sounds easy and it's not. So, and this is pacing, like say I'm a distance runner. So I understand how to pace, you know, over running, but to pace in your life is so challenging. So it might mean breaking something up. Pts will understand this. Some, some of us can sit at a computer for a few hours just to go through those notes, get them done. I can't anymore. So it's like maybe set a little chunk of time and then maybe you need to rest. Maybe you just need to get up and take a break. It might be cleaning your house that you can't do it all in one shot that you need to maybe do some in the morning and some at night, some today, some tomorrow is I look at it as like finding opportunities to slow down and opportunities to rest and something I've noticed as the world doesn't really set up for that.

Speaker 2 (08:14):

It is really, really challenging. You do your best and there are certain things, you know, you won't necessarily be able to pace with, but when you can just trying to spread it out because our energy is very finite and this is like literally at the cellular level, the energy is just not there. So you can't necessarily push through it. You could try, but that's going to affect you tomorrow. And then you'll be at a deficit for the next day and the next day. So it's learning how to pull back. Do what's really essential first, like really prioritize and finding opportunities to rest when you can,

Speaker 1 (08:48):

Yeah. Much, much different than a graded approach to activity or a graded approach to exercise is every time you do something, you increase it a lot, a little

Speaker 2 (08:57):

Bit more. And that's, what's interesting too, because yeah, that's just, that's what we do, but because symptoms can be unpredictable just because like, I'll use an example just because I could pick up five pounds one day doesn't mean I could do five or six pounds the next day. It might be the next day one pound. So it's really, really hard. You have to really listen to the patient and just go off of how they are feeling that day and let them know too that they're not doing worse because they can't do the same amount of whatever it is that they could do the day before. I mean, that's a hard thing. You look at it. You're like, but I just did this two days ago. Why can't I do the, why am I so tired today? It's so complicated. So yeah, it's trying to avoid that a little bit more the next day, a little bit more, a little bit more and just work with where you are that day, wherever your symptoms are at let's work from there,

Speaker 1 (09:41):

It's a much different mindset than what we're used to. And now, as, as we talk about that, I think that there's something important that we have to mention and that's athletes living with long COVID. So with athletes, we have to get them ready to get back onto the field, which means they have to be able to do a little bit more, a little bit more, a little bit more because they need to be able to compete. They need to be able to perform. So what are some specific considerations for athletes returning to sport post COVID infection or athletes with long COVID?

Speaker 2 (10:19):

Yeah. I look at this as with any athlete who has had a COVID infection and you just need to be aware and just be monitoring for possible little red flags that they might be going along COVID direction, because for anybody it's not always immediate, there are people who are doing okay in a couple months later, I had a flare up and we know with athletes in general. And I say this as one we push, you know, there are athletes who have plead while they have broken bones and concussions and all kinds of things. So the fact that they're able to keep going doesn't necessarily mean that it's safe. And an example for me, like I ran 10 and a half miles, two months after I got sick, which is insane, but I pushed and I did it. And then you could look at my heart rate and see why it was bad.

Speaker 2 (10:58):

So you're monitoring for, especially that post exertion L symptom exacerbation, if after they're working out, they're doing their practice, even watching film the cognitive demand for that, if it's a sport that has filmed, are they crashing? Not just the normal you know, you're a little fatigued or maybe have some dorms or something like that, but they're just completely done. It's really important to educate them and let them know because they might just think that it's just deconditioning. You need to get back in shape really important to monitor their heart rates too, because then they're going to push, especially getting back now after, after not being able to play sports from the pandemic, everyone's gonna be excited and have big adrenaline rushes and be able to push. And it's great to be able to look at some vital signs, to look at their heart rate, look at their blood pressure and see what it's doing, because they might not always be aware of what's going on to report it, but we know what you could look at as something objective like a heart rate and see, this is not the normal response from like what we would expect.

Speaker 2 (11:50):

So I know in the literature there's been some emphasis on clearing them for cardiac conditions, obviously super important. We see myocarditis and all kinds of things that is very important, but we're seeing many people in general on COVID whose basic lab work imaging is negative. But that doesn't mean that they're necessarily. Okay. So it was looking for the dysautonomia, particularly with sport, looking for the post exertional symptoms, symptom leaves after their playing, after their conditioning, again, after even cognitive exertion to see how they're doing monitoring for months, you know, don't assume because they were okay in the beginning because they're able to push through a couple of things that they're okay. Cause athletes will push through some pretty dangerous things to play.

Speaker 1 (12:27):

And can you just for the audience give a specific definition to the post-exercise malaise or post-exercise symptom exacerbation. Cause I really want people to understand that it's not just like, I'm a little tired and I just need to rest. So can you explain what that means?

Speaker 2 (12:47):

Yeah, it is. That looks like yes, it is actually physiologic reaction. So people will report an increase of flare up, increase in severity of their symptoms and you will actually see like physical, sick symptoms, like a fever is I think a really great example because no matter how hard you push exercising, a fever is not normally you know, response to that. And it is, it is so hard to explain when she experienced it, how crippling the fatigue is. It is something you cannot push through. Like you cannot get up. It sounds like I'm exaggerating, but I'm not. And I was talking to PT, Todd Davenport about this. And he, with his work in chronic fatigue was saying like, it's literally two energy demanding to talk like the amount of energy it takes for what we're doing right now is not there. So, and again, it can vary too.

Speaker 2 (13:38):

There are crashes. That's what I've kind of called them. Some other people too, that can be a little minor is not the right word, but not as severe. And some that are, people are literally bedbound and are unable to get up and it can vary to where the post exertional symptom exacerbation, those crashes can last for a few hours. They can last for days, weeks. Some of us, it takes us months to be able to bounce back from one. And even that, we're just trying to get back to that baseline of where we were when the crash happened. Not like a true, like pre-illness baseline. Got it. Yep.

Speaker 1 (14:10):

Thank you for that because I think it's really important to make that distinction for the listeners. Now let's talk about let's talk about the rule of social media when it comes to long COVID or COVID in general. I mean, we all know that social media is full of misinformation. As a matter of fact, I was reading an article where they said the long COVID misinformation, 80 or 80, some percent of the long COVID misinformation and misinformation on vaccine surrounding lung COVID was coming from 12 accounts.

Speaker 3 (14:46):

Can you imagine

Speaker 1 (14:47):

They just happen to have like a really, really strong presence and a really large following on social media. So what is the role of social media with long

Speaker 2 (14:56):

COVID? This has been fascinating. So we all people with on COVID found each other on social media pretty early. This part I didn't find initially, but body politic, they found each other really early in starting this whole launch. The patient led is another group too, but so this patient led movements. So people just coming together and saying, we're not better. We don't necessarily know what this is, but this isn't right. This isn't the two week recovery that we're hearing about. And at the same time people with chronic fatigue were jumping and they had been sounding alarms from the start of the pandemic. We didn't know about it. Cause you know, we weren't in that space. And then, so it's the people with lung COVID who named it. We gave it a name when we, you know, we weren't being heard initially because things, you know, being New York city, things were so severe that the focus was on the acute.

Speaker 2 (15:40):

We severely sick hospitalized people. So we on our own kind of came together and gave it a name and have gone from there. So that's social media has allowed for peer support groups and we have long COVID physio specifically for PTs, PTs, other allied health care professionals with it. I'm in a group for endurance athletes with long COVID. I'm sure there's plenty of other like specific groups where you can relate to each other because when you try to explain this to people who don't have it, they look at you like you're crazy because it just sounds so ridiculous. It doesn't sound like it's real, especially for those of us who were young and healthy and fit, you know, prior to COVID and then it's allowed us to get information out really fast where, you know, it takes a while to publish. It takes a while to do a study, but all of us, you know, we've been our little ends of one, like I'm going to report what I'm going through.

Speaker 2 (16:23):

You know, PT, Twitter was great. Encouraging me from the beginning, just report where you have. Cause that's, you know, that's one example we'll learn from. So we've been able to get that information out and papers have gone out very quickly. We have had some amazing webinars and just things that are, people are just producing so quickly and on their own, sometimes it was faster than having to go through a whole, you know, association and, you know, with the journal and everything. So that's been amazing and we find each other and I know which are the accounts that are going to put out like the peer reviewed articles when they're there. I know, which are the accounts that are going to have the great webinars and all the free things that are available on YouTube to watch. I know which are the counselors patient share and their stories. So you kind of find to what fits with, with what you need to know and whether you're at the, just the patient level or you're a clinician who needs information

Speaker 1 (17:08):

And can you, what are some of the accounts or, or if you want, you can send them to me and people listening can just that way you don't have to rattle through land accounts that no, one's not going to re no, one's going to remember anyway. So if you can send me some of the accounts of individuals and groups that people, if they're listening have long COVID, they know who to follow on where to get accurate information

Speaker 2 (17:32):

From. Yeah. Yeah. That's a great point that accurate that's been for better or for worse having clinicians and researchers with long COVID gives you people who know what they're talking about that you can follow them and I'll add for what you said. Cause I went, oh no, because one of the things that happens with long COVID is brain fog which is a broad term. And it sounds like not much, but the symptoms, the cognitive symptoms really, really range. And you'll see some of us just kind of get stuck finding words or trying to remember something, or I can picture people's Twitter profile photos. Couldn't tell you what the handle is on the list. Like actually see it, that's been a really challenging thing. I've been trying to kind of figure out how to work so I can send you yeah. Cause that's great. It is, it is so great to have other people to follow who are in the same boat or what we're calling, you know, allies, people who are sharing, they might not have it, but they're in a clinical space or research based to help.

Speaker 1 (18:21):

Yeah. Fabulous. Yes. So for all of you listening, Daria will send them to me. You can go to podcast dot healthy, wealthy, smart.com click on this episode and then you will click on whichever of those links you would like to follow. That would be much easier. Okay. So now let's talk about just this'll be well, we'll sort of finish up our conversation on a light note. Let's talk about the mental health considerations of those

Speaker 2 (18:50):

Living with Ms. Oh yeah. This is a whole big topic. So I'll start with it was pretty early on from when I had symptoms that somebody had first mentioned anxiety in me kind of implying that might be what the cause of my symptoms were. And I just say for me personally, I'm not an anxious person at all. So on one end, we're, you know, we're trying to say that it is virus driven. People can have mental health aspects a lot to get into, but that's not the root cause. So it's really important to tease out because people are told and I'm learning all about this from other people, chronic illness going in that direction and say, no, but psychological interventions can help, but that is not the underlying cause. But that alone, when people are telling you you're anxious, you're depressed when that's not what's driving.

Speaker 2 (19:34):

It is really frustrating. But because of all these symptoms, having this new chronic illness during a pandemic that has been politicized with false information is really hard because you'll talk to people who don't believe in the science of what this is, and they don't know that you have long content and you're just so that's really, really difficult. And it changes your life. You know, it's a complete change in your identity for all of us, particularly who are really active, whether it's exercise or as PTs, if physically demanding jobs. And you have to like figure out who you are now, if you can't do all the things you used to be able to do, you know, who are you? And then say for me, like running and dancing, that was my stress relief. That's my outlet. That's how I express myself, particularly with dancing. And now, you know, I'm not able to do that.

Speaker 2 (20:23):

Like I was before and it takes a toll and you're trying to find, well, what can I do then? What, what am I able to do to try to help cope with these symptoms is it is so frustrating. You are trying to figure out how to live with symptoms that are unpredictable and episodic. And like I mentioned before, you know, the world isn't adapting to what's going on in the world, just going on, like it was before the pandemic. So having the peer support has really, really invaluable to have other people to talk to that, understand it. And you can not only explain the symptoms, but you can be going through the symptoms and you know, they understand when you forget your word, when you stumble, when you're just too tired to sit up. So you're on a zoom, lying down. There's so many things like that.

Speaker 2 (21:06):

When you have people that to just, just to vent to or who, you know, they just understand what you're going through. That's been really big because the first for me, the first few months, I didn't know anybody else with it. And I obviously, there's plenty of great PTs who I was talking to, trying to help and my friends. But when you have people to talk to who understand that makes such a difference. It's just like, there's weight off of your shoulders. And like, oh, you understand you get it. I've met people. When we work with employer clients for my job who have long COVID and they start to explain the symptoms to me and I could see them kind of hesitating when they say that, it's like, no, no, I understand. I understand that you get really sweaty all the time. You're not crazy.

Speaker 2 (21:41):

That's a real symptom. That is a thing we can talk about that because this is something I didn't appreciate earlier. I work in orthopedics and it is, you know, there, there is a mental health aspect to it, but this is a whole other world there wasn't aware of. Yeah. As a PT, it's making sure you're listening to the patients that you're validating their experience and not say maybe if you're not familiar with this thing, well, that's weird. You know, that, that can't be right, that you're really listening to them. And that when you're, as you're listening, if you're hearing some of those red flags that maybe as a results of long COVID, or maybe they had anxiety and depression already, and this is exacerbating, it know that you're listening, you're ready to provide resources. If that's appropriate. And then now we're even taking a sad turn, but there are people who are committing suicide from long COVID.

Speaker 2 (22:26):

There was just a big case in the news because the woman was a writer. There's somebody who owned a chain of restaurants, it was pretty famous that had committed suicide. And there's more that are in the news, but that's really big too. And it's something that, again, I didn't necessarily appreciate until I was going through not only chronic symptoms in general, but symptoms where there's not a cure or treatment necessarily. So it's a whole new, a whole new world to learn about this. So as a PT, it's just really listening to the patients and under trying to, you know, understand, be open to what they're going through. That it's not just physical symptoms, but it's going to affect their entire being.

Speaker 1 (23:02):

Yeah. And you know, in Darren and I were talking about this, I said, you know, it reminds me or it makes me think of people with a headache, chronic headaches, migraines, maybe neck pain, back pain, where, you know, you're not walking with an assistive device. You don't have a limp. You're, you know, you don't have the symptoms of someone who's quote unquote sick. So it's one of those sort of silent silent diseases, if you will, or, or silent symptoms for a lot of people. And to have to explain to people why you can't meet them for dinner or why you kept it, it can just be, so how do you deal with that? Oh,

Speaker 2 (23:49):

This has taken a long time because I'm someone where you can look at me and assume I'm high functioning. Cause I go to work every day, you know, I, to a degree, kept up with dancing. But I'll explain to people and they're not getting it that they don't see what it takes for me to be able to do those things. The resting that I have to do, as soon as I get home from work or dance or something draining, I lie down I'm supine. That is like, if, as long as my schedule lets me do that, that's the first thing I do when I walk in the door. If I have to dry for a while, if I can I sit down when I get done or lie down even better. So there's a lot of strategies like that, that go on that you wouldn't see unless you're next to me.

Speaker 2 (24:24):

So I'll tell people about that. You know, I might look okay, but there are symptoms that are going on and I'll explain to a particular thing because I dance, you know, and the show must go on. I'm accustomed to ignoring symptoms and smiling and getting out on stage and spurt, you know, pretend everything's okay. So that's something that I've learned. It's not the greatest treat to have with long COVID because again, people, it just looks like, you know, we're okay. But it's, it's explaining, you know, what it takes to be able to just do basic things like food shopping. And what advice do you have for

Speaker 1 (24:56):

For people living with long COVID when it comes to their mental health? I think the advice that you just gave for therapists to really listen to your patients, not only listen, believe them. But what advice do you have for people living with long COVID? If they are kind of suffering their mental health is suffering.

Speaker 2 (25:17):

Yeah. A big thing is like, we've already talked about social media. If you can find, there are lots of great peer support groups. There are just general long COVID groups on Facebook. And then, you know, there's specific ones targeting you know, very specific populations. So at least even if it's not, you're not, you're not getting professional help you at least have other people you can relate to because I know that with long COVID clinics that are, that are starting on their wait lists. So trying to go through that referral system, you know, to try to get to somebody to help can be a little challenging. And I know for me and other people it's been having to just kind of accept that this is a thing going on and that it's, you can't push through it. You can't just kind of wish it away.

Speaker 2 (25:59):

You can't ignore it, it's there and you can, you can try to ignore it, but it won't let you, you're not going to get very far. And is this so much easier, seven number, just trying to accept the, how uncertain it is and just being able to kind of roll with it and know, you know, you might plan, have plans for a certain day and you wake up and say, Nope, that's not today. That's not going to happen. You know, I wanted to go to the pride parade on Sunday in the city and it was 90, whatever degrees, obviously very crowded. A lot of stimuluses Nope, this is, this is not a good idea. It would have been great to do, but not safe. So it's being able to, you know, recognize your limitations and something. I can't remember who told me this, but it's not only acknowledging the things you can't do because that is important to recognize certain things that are not right now, but something you did do that day.

Speaker 2 (26:45):

Like maybe I wasn't able to go food shopping, cause it was too much, but I didn't crash. I got through the day without a crash. So that's a positive thing. And it's hard again because it's not always in our control, but I that's something I've been trying to do as frustrated as I get, because there's so many things I can't do right now or I could, but I shouldn't because I've learned the things I shouldn't do. Just also recognizing there are still things that are not control maybe even on the worst day and you're not able to really get up and do much look at your heart rate and say, Hey, but I was able to keep my heart rate at a fairly low level because I understood that I was supposed to stay in bed. So looking for those little wins and victories, even if they're small and if they don't seem like much, if you're accustomed to doing a lot, it helps. It gives you just like a little bit incentive. So you can kind of look at the big picture and see that if you aren't making progress.

Speaker 1 (27:30):

Yeah. That's such great advice. And you know, Louis Giffords called that, looking for the pink flags. So looking for those, you know, cause we got red flags, yellow flags looking for those pink flags, which are those, those exactly what you just said those times where you're like, you know, I still have back pain, but Hey, I was able to sit through a movie, right. Or, oh, I was, I wasn't able to get out, but I was able to, to do some stretching. Right? So it's like, these are, you're really looking for those pink flags, those things that give hope that give a sense of accomplishment, however, small or big it might be. So I think that's really important.

Speaker 2 (28:14):

So now, so it's helpful two, because you don't know from day to day, what's going to happen. Which is just makes it so hard. That is the really frustrating part. And like you really have no idea. I can't remember. There's so many things that I've read. I always forget who, where I read what, but there was a physician who said with long COVID, it's like putting your hand in a bag of symptoms and pulling them out and say, this is me today, which is very accurate. That is a hundred percent accurate. So yeah, when you can say, all right, well today didn't turn out as planned, but I did something or at least, you know, things didn't get worse. Sometimes literally the accomplishment is that things didn't get worse and we're able to sort of manage it. It just really changes your perspective on how you look at things. But it's knowing that we don't know what's going to happen. We don't have a predictable, rough timeline on what to expect. We don't know that, oh, if you're in this age range, you're more likely to have this. Or if you were healthier, you're because we're seeing people who had no comorbidities I'm like, you know, with the severe acute infections. So just looking for those little wins can make a difference. Yeah.

Speaker 1 (29:16):

And, and living with that uncertainty certainly not easy. But if you have support groups, you have friends, family, peers, professional help. I'm sure that all of those things can help you kind of manage your life and manage where you are at this moment.

Speaker 2 (29:37):

Yes. I was explaining to my patients today that I, because she was, she was explaining friends who aren't understanding it and if it's going to happen and this, as soon as you have to, I think of the Mr. Rogers quote about finding the helpers. And in that case, you know, I had a friend who visited that hadn't seen our literally two years, but I knew she would understand. And there was a couple hours, one day I just had to lay down and I knew that would be a non-issue for her. She'd either take a nap or find something else to do. So I was looking for that, like knowing who the people are in your life that they'll understand. If you have to cancel last minute, that's fine. If you need to sit down last minute or, you know, slow down, you can do it, but that they will understand. And that's not going to be everybody not everybody's going to get it, which is fine. It's frustrating. But you know, it is what it is. But looking for those helpers who even if they can't directly help you, you know, cause they're not in healthcare, they at least will understand. They at least will listen to you. And they'll at least say, no, that's fine. This is who you are today. So we'll work with that.

Speaker 1 (30:31):

Yeah. That's so great. I think that does sound something like very Mr. Rogers E write something he would say. So now what would you really like for the listeners to kind of take away from

Speaker 2 (30:45):

This episode? A couple of things is the one is with anyone with long COVID, whether are living with it, or you have patients with it to not try to push through symptoms. I cannot stress that enough. You can use me as the example of why you should not push through symptoms. I have tons of data available from my garment and heart and crazy heart rate things. And it is just not something you can push through and it's not a failure on somebody's part. It's not that they're not trying hard enough. It's not that you're not strong enough. It's just physiologically. This is where you are right now and really doing your best to embrace. It's hashtag stop, rest pace, which is from the chronic fatigue community to really, really try to do that while there's, you know, like I said, there's no set treatment or cure.

Speaker 2 (31:31):

We know that that that helps it. Doesn't magically fix everything and everybody's different with how you implement it in your life. But the stopping resting and pacing makes a really, really big difference. And like as a PT, you just need to be open to the paradigm shift. It is so different than what we are taught from, you know, my mindset like so many people's it was, I gotta move. My dad's a respiratory therapist. He's retired now. But when I got sick last year in March, he said, knowing me, you know, you need to wait two weeks until you don't have symptoms before you start running is like, that's crazy. No, I got to move. And here's all the reasons why I can't be sedentary. Here's all the health reasons. And now I've had to like shift that in my brain a lot and say, okay, I know there's risks with bone health and cardiac disease and all these things, but the priority right now is trying to get the symptoms under control and really trying to prevent crashes as much as possible. So just being open to that, and yes, there are concerns about being sedentary, but right now preventing the crashes, supersedes that.

Speaker 1 (32:23):

Got it. Excellent advice. Now, where can people find you on social media,

Speaker 2 (32:28):

On Twitter? I'm on Twitter often. And I would say you can tell when I'm lying down resting, cause that's when I'm tweeting. Well, good to know it's at on tap physio two, number two, that is the best place to reach me on Instagram. I'm ONTAP physio. Excellent. It's on Twitter often. Yeah. Yes

Speaker 1 (32:45):

You are. And you get spread a lot of really, really good advice and, and we all appreciate your being there and being a voice of truth for people living with lung COVID and for clinicians who want to learn more. So we all thank you for that. Now last question I ask everybody this, where what advice not, where, what advice would you give to your younger self knowing where you are now in your life and

Speaker 2 (33:15):

In your career? I'm laughing because to not push so hard, which is crazy as a physical therapist or someone in healthcare in general, but to not push so hard. You know, I learned at my very type a all girls high school to push, like we just push you work as hard as you can. You grind got that in undergrad. And I was at the other training student, obviously I was in PT school and after that, and it has been to my detriment now that we're, you know, we look at that drive that that's such a great thing to have and look how resilient you are, look how antifragile you are looking all these great things, but we're seeing with not just lung COVID, but other post viral illnesses that can actually really harm you life in general. Yes. Yeah. And we get accustomed to not sleeping and illustrating caffeine and all that. So it sounds crazy to be saying to myself, knowing how I am, but it's to learn, like you don't have to push so hard all the time that things will be there. You know, you, you know yourself, you know what you're capable of doing, but resting actually resting, not doing things just resting is really, is as important as pushing hard and pushing hard can lead to all kinds of fun trouble.

Speaker 1 (34:30):

Absolutely. I think that is great advice. And one that I think any, certainly any PT should, should take and should live by. So thank you for that. And thank you for your honesty and being so candid during this conversation, because I think it will help a lot of people. So thank you so much for coming

Speaker 2 (34:48):

On. Well, thank you for having, like I said, finding the helpers, you are one helping to get all the information out to people on your, you have such an incredible platform where it's so important that we're reaching people wherever they are, and podcasts are definitely a way to do it. So thank you.

Speaker 1 (35:03):

I am happy to do it and I am learning more and more myself throughout this whole month. So thank you again and everyone. Thank you so much for listening. Have a great couple of days and stay healthy, wealthy and smart.

Work Like A Woman: Campaigning with Caroline Criado Perez